Dementia caregivers: introducing the caregivers (Presentation at ARDSICON 2013 Guwahati India)


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Dementia caregivers handle a lot of work and responsibility for many years, but often do not realize how critical their role is. This presentation discusses caregiving in the context of dementia. It covers commonalities and differences amongst various types of caregivers. It looks at a range of caregivers who may vary in terms of their age, gender, relationship with the care-recipient, whether paid or unpaid, and whether living with the person or coordinating care from a distance.

For discussions on how to plan and cope with dementia home care, see:

Published in: Education, Health & Medicine
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Dementia caregivers: introducing the caregivers (Presentation at ARDSICON 2013 Guwahati India)

  1. 1. Who are we: Introducing the Caregivers Swapna Kishore XVIIIth National Conference of Alzheimer’s & Related Disorders Society of India (ARDSI) Guwahati (India), November 2013
  2. 2. Some aspects we will explore...  Why persons with dementia     need care Who is a dementia caregiver? Commonalities and differences amongst various types of caregivers Applying available advice and support The importance of recognizing “caregiving” as an activity/ role So many people live with their elders or ailing spouses, what’s this fuss about!! I’m not his caregiver! I’m his wife, this is my duty! 2 © Swapna Kishore Of course I’m a caregiver! I wish people would recognize that!
  3. 3. What is dementia?  Examples of dementia symptoms...  How different is it from “normal ageing”?  What sort of difficulties do persons with dementia face?  Why do persons with dementia need care?  Examples of care challenges... 3 © Swapna Kishore
  4. 4. Quick overview of dementia  Dementia is a syndrome usually characterized by a progressive, global deterioration in intellect including memory, learning, orientation, language, comprehension, and judgment due to disease of the brain ( -- Dementia India Report 2010)  Symptoms caused by one or more diseases  90% caused by Alzheimer’s Disease, Vascular Dementia, Dementia with Lewy Bodies, Fronto-temporal dementia  Different underlying diseases have different characteristic symptoms and different underlying changes in the brain 4 © Swapna Kishore
  5. 5. Quick Overview of Dementia Dementia subtype Early, characteristic dementia Proportion of symptoms case Alzheimer’s Disease (AD) Impaired memory, apathy and depression, gradual onset 50-75% Vascular dementia (VaD) Similar to AD, but memory less affected, and mood fluctuations more prominent. Physical frailty. Stepwise progression 20-30% Dementia with Marked fluctuation in cognitive ability. Lewy Bodies (DLB) Visual hallucinations. Parkinsonism (tremor and rigidity) Frontotemporal dementia (FTD) 5 < 5% 5-10% Personality changes. Mood changes. Disinhibition. Language difficulties. (From table 1.1 of Dementia India Report 2010) © Swapna Kishore
  6. 6. Quick overview of dementia  Dementia is NOT the same as ageing  Forget where a key is kept versus not knowing what a key is  Forgetting own name, children, year, city  Most dementias are irreversible and progressive  Role of medicine currently is very limited  Cannot be reversed by medicine  Dementia affects every person differently  Depends on the underlying disease  Depends on what the person was like before the disease— personality, lifestyle, significant relationships, health  Deterioration rate also differs  Can range from a few years to over a decade, with more care being needed as dementia progress  Care approach therefore needs constant adjustment  flexible and creative 6 © Swapna Kishore
  7. 7. Who is a “Dementia caregiver”? 7 © Swapna Kishore
  8. 8. “Dementia caregiver” Someone with dementia is the care-recipient The dementia caregiver has  some degree of responsibility (for at least some time) for person/ care decisions  some degree of share in the tasks  doing them/ arranging for them/ paying for them  “provide or manage care”  actions affect the well-being of the person Typically, the caregiver can handle care better with  good understanding of dementia and its impact on the person  knowledge and skill with suitable caregiving techniques  use of support, services, etc. (Note: the caregiver may not consider himself/ herself as a caregiver, but the knowledge and tools will still help) 8 © Swapna Kishore
  9. 9. About the care and the caregiver Some excerpts from the Dementia India Report 2010: Care giving has been defined as “... the provision of extraordinary care, exceeding the bounds of what is normative or usual in family relationships. Care-giving typically involves a significant expenditure of time, energy, and money over potentially long periods of time; it involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting.” giving is a long-term evolving process. The onset of caring is often hard to define. The need for care may precede or post-date a formal diagnosis of dementia. Need for care tends to escalate over time, from increased support for household, financial and social activities, to personal care. Later on, in several cases, it could involve almost constant supervision and surveillance. 9 Dementia care in India is almost entirely home based. © Swapna Kishore
  10. 10. “Dementia caregiver”  There is no “standard”/ “uniform” experience of being a dementia caregiver, but there are commonalities  Wide range in types of dementia caregivers, on aspects like  Abilities of dementia of person receiving care (hence, type of         care needed) Relationship of caregiver to person Type of tasks done by caregiver Degree of responsibility Amount of time, energy, money being used for giving care Distance from the person receiving care Paid or unpaid caregiver Amount of changes the caregiver makes to handle this care work How the caregiver identifies with the label of “caregiver” (Note: a person with dementia may have many caregivers) 10 © Swapna Kishore
  11. 11. Examples of things caregivers do  Create a living space that is safe and suitable, given the current level of the person’s abilities  Help with activities of daily living  Bath, grooming, eating, walking, exercise, etc.  Handle challenging behavior  Agitation, wandering, withdrawal  Do interesting/ stimulating “activities”  Coordinate the use of support services  Keep adjusting support to the changing abilities of the person Care could require almost full-time availability, include physically tiring work, and be emotionally exhausting 11 Caregiving continues for years, even more than a decade © Swapna Kishore
  12. 12. Difficulties many caregivers face (Family caregivers)  Adjustments in career / leaving career (to be available for care)  Social isolation/ loss of friends and colleagues  Reduced time and energy for other roles/ responsibilities  Sense of loss/ frustration  at seeing the decline or coping with challenging behavior  Financial problems (reduction in earning and increased cost of care)  Physical fatigue  Depression  Stress  Criticism from outsiders who do not understand (Impact is lower for paid caregivers) (This work is very different from living with or caring for a cognitively alert elder) 12 © Swapna Kishore
  13. 13. Care-recipient: the person with dementia Persons with dementia  may not believe or understand the diagnosis  (or may forget it)  may not realize they need help or care  may cover up mistakes, causing caregivers to underestimate their difficulties  may be scared that accepting help makes them seem weak/ bad  may resist care/ help 13 © Swapna Kishore
  14. 14. The criticality of caregiving Dementia is often irreversible and progressive • More and more help needed • Many years Limited role of medication Wellbeing of person with dementia and the family depends heavily on the caregiver  How well they understand dementia and can apply suitable tools  Their emotional ability to cope  Time, energy, money they can use Also, on availability of paid care and various support services 14 © Swapna Kishore
  15. 15. When does caregiving start?  A person develops dementia  Often insidious, symptoms progress from mild to moderate to severe  Diagnosis often delayed  Someone provides the care  Care required increases as dementia worsens  Family members may not start seeing themselves as “caregivers” because of the diagnosis  Family members may never think of their care as being “caregiving” 15 © Swapna Kishore
  16. 16. The onset of caregiving When is the person diagnosed? Changes are usually gradual Condition keeps getting worse Person develops dementia Abilities change, person begins facing difficulties Family members start supporting person as the abilities reduce Daughter Daughter who is helping mother When can the daughter start benefitting by understanding dementia and using tools and services? When does she start considering herself as a “caregiver” daughter? 16 © Swapna Kishore Caregiver daughter?
  17. 17. Paid caregivers Person diagnosed with dementia needs care (in a residence or a dementia facility) Work hours job description: Paid caregiver helping someone with dementia Paid caregiver goes to work At home/ non-working hours 17 © Swapna Kishore
  18. 18. Paid and unpaid (informal) caregivers Commonalities  Need knowledge of dementia and of caregiving tools Differences in  Onset/ identification with role  How many hours a day, how many years  Time and energy available (because of other roles)  Degree of choice of role/ ability to walk out  Emotional relationship and past history with person  Knowledge of person (and existing interaction patterns)  Setting in which care is provided may also be different  Recognizing that knowledge, tools, and support will help  Availability of training, peers, knowledge base  Advantage/ disadvantage of seeing other persons with dementia 18 © Swapna Kishore
  19. 19. Live-in and distance caregivers  Distance caregivers’ helplessness, reaction time  Differences in how they view current state of person with dementia  Live-in caregiver’s fear of getting over-involved/ submerged  Can result in criticism, mistrust, lack of status sharing  Advice needed is different for these different profiles 19 © Swapna Kishore
  20. 20. Male and female caregivers Societal expectations are different  Females typically considered more “suitable”, expected to give up their career, have more “duty”  Upbringing may have equipped females more for some aspects  Males may be reluctant to admit their role openly (especially a son who gives up his career while his wife continues hers)  Advice and support may be less available for males Also, the problems of caring for someone of the opposite sex 20 © Swapna Kishore
  21. 21. Primary and other family caregivers  Even within the home, some are directly     involved, some are not Primary caregiver:  Immersive caregiving and main responsibility  More loss of other identities/ roles Other family caregivers:  “When I have time” help, “Emergency” help  More likely to continue with other identities/ roles Difference in type of guilt, blame, responsibility, “accountability” Difference in levels of stress, fatigue, isolation, types of concerns and issues as caregivers 21 © Swapna Kishore
  22. 22. Young, middle-aged, elderly caregivers  Young (even teenaged) caregivers of parents/ grandparents/ aunts/ uncles, etc.  Affects education, job  Financial crunch  Peer group priorities and activities very different  Middle-aged caregivers of spouse, siblings, parents, friends/ relatives, etc.  Also handling kids, career, other elders  Major time management problems, financial problems  May have health problems  Elderly caregivers of spouse, siblings, friends, relatives, children with early onset, etc.  Own health problems, physical inability, poor mobility  Other elderly members needing care (e.g., spouse, siblings)  Peer group often unavailable, ageing, distant  Lack of savings 22  Lack of “contacts” © Swapna Kishore
  23. 23. Caregivers for different types of dementia  Symptoms and progression different for different types of dementia  Most awareness focuses on “majority”  Elders more likely, “memory loss” a typical symptom  So other types of dementia  Delayed diagnosis, especially if early onset and no memory loss  Many volunteers/ systems not as informed/ sensitive  Keep using “Alzheimer’s” as the model  Behavior problems are not identified as dementia, advice and “My husband tried to kiss the nurse. His mother said his character is spoilt and slapped him.” tips less available. Caregivers unaware of what to expect. Examples:  Agitated behavior/ indifference (when there is no memory loss)  Unable to manage money  Abusive language, dis-inhibited behavior  Early onset support is lower 23 Caregivers may need to join communities for specific type of dementia © Swapna Kishore
  24. 24. Available caregiver advice  Often does not differentiate between types of caregivers and their care settings/ situations  Advice may be impractical in current settings  Poor support and awareness  Culture/ country  May not focus on emotional adjustments needed by family caregivers  Provides procedural/ prescriptive advice  But may not “counsel” on how to get over past patterns/ emotional difficulty of watching person deteriorate  May not include tips directly applicable to a particular person’s dementia challenges/ environment 24 © Swapna Kishore
  25. 25. Understanding variety of caregiver concerns is helpful  Many concerns and challenges are common across caregivers  So are the tools  But often, available advice is bundled for some sort of a universal “caregiver”  To use available material (books, trainings, support, etc.) effectively  we need to view it using our perspective and pick what is helpful  we may need to adjust advice to fit our situation better  we may find useful tips even if our specific situation not addressed Volunteers can offer better suggestions if they understand various care situations 25 © Swapna Kishore
  26. 26. Available support for dementia care Types of support include     Availability of trained paid caregivers Day care, respite care Subsidized medicines/ care costs Caregiver resources, training, support groups Often very low support We may have to create our own support systems  Educate friends, relatives who are willing to listen  Modify and use support systems available for other illnesses/ ageing elders  (like training elder care attendant for dementia) 26 © Swapna Kishore
  27. 27. Caregiving is not done in isolation  Is the community dementia aware?  Is the community dementia friendly?  If not so, caregivers also have to  create a supportive and well-informed environment  build safeguards from problems created by ignorance of others  Individuals, systems 27 © Swapna Kishore
  28. 28. Returning to “Caregiver as a role/ activity” How accepting the label helps  “Doing important work”, not “forced to     give up my career to stay at home” Caregivers are willing to seek information, training Open to support groups Sense of community Reduces the learning curve However,  Some people dislike the label  People around them may scold/ shame them about the label 28 © Swapna Kishore The “caregiver” label  A role? An identity? Just a description of some activities?  Usually self-chosen, not using a standard definition
  29. 29. Recognize caregiving activities Family caregivers need support to  Handle dementia care  Handle other roles and responsibilities  Maintain their own health and well-being  Maintain their sense of worth/ identity  Cope with the loss and resume non-caregiver roles when the caregiver role ends Paid caregivers can be a critical component  Needed for supporting at home  Needed in institutional support Recognizing the activities as “caregiving” reminds us of the resources and tools available, and also the critical role we are playing 29 © Swapna Kishore
  30. 30. Summing up...  Dementia caregivers perform a critical role by their care for persons with dementia. There are commonalities and diversities across various profiles of caregivers  Whether or not they consider themselves “caregivers”, persons helping those with dementia can benefit from better knowledge, better tools, and better support  We can create a community with plenty of information and resources suitable for all of us if we recognize the common concerns and approaches and also respect the variations across caregiving situations 30 © Swapna Kishore
  31. 31. Thank you! For more information on dementia care in India, visit: Website: Blog: Swapna Kishore ( 31 © Swapna Kishore